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J Palliat Med. 2005 Dec;8(6):1176-85.

Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said?

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  • 1Department of Epidemiology and Public Health, Yale School of Medicine, New Haven, Connecticut 06520-8034, USA.

Abstract

BACKGROUND:

Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues.

DESIGN:

Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers.

SETTING/SUBJECTS:

Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002.

MEASUREMENTS:

Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice.

RESULTS:

Many family caregivers reported that a physician never told them the patient's illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient's death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting "bad news" was apparent in both qualitative and quantitative data.

CONCLUSION:

Our findings suggest that ineffective communication about end-of-life issues likely results from both physician's lack of discussion and family caregiver's difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.

PMID:
16351531
[PubMed - indexed for MEDLINE]
PMCID:
PMC1459281
Free PMC Article
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